Twenty-four transplants is an unusually large number, especially for a very young child, but it was crucial for the specialists to repeat the surgery until it was successful due to the rapid development of an infant’s brain. Deacon’s sight had to be restored as soon as possible so that the visual communication pathways between his eyes and brain would be stimulated and developed. If the part of the brain that controls sight is not used, it will atrophy and close down to all future messages—even if perfect vision was one day restored.

During a cornea transplant, a disc-shaped segment of the impaired cornea is replaced with a similarly shaped piece of a healthy donor cornea. The cornea is the clear front of the eye that covers the coloured iris and the round pupil. Light is focussed while passing through the cornea, making sight possible. The cornea must stay clear for good vision. Due to the repeated transplants, Deacon’s cornea was a little swollen and scarred, and thus lost some smoothness and clarity. The scars and irregular shape caused the cornea to distort light, resulting in glare or blurred vision. Therefore, Deacon is officially considered legally blind. Two years ago, he received his 25th cornea transplant due to rejection problems in his left eye.

Deacon does not let his visual impairment interfere with living a full, active life with his parents, Randi and Cecil, on their boat moored in False Creek. Deacon attends False Creek Elementary School, and swims competitively with the Dolphin Swim Club. Deacon explained “My favourite swim strokes are freestyle and breast stroke, and I am going to start running with my Mom soon to get into even better shape, so I can swim even faster”. In addition to swimming, Deacon plays the guitar and is an avid skier. Asked why he wants to be an Anaesthetist when he grows up, Deacon matter-of-factly says, “because I want to be able to help children through their operations, like I have been so kindly helped by all the staff at BC Children’s Hospital.”

In between all of his school and sports activities, Deacon has made a few appearances on local media to talk about his experiences. Two highlights were appearing on the CBC program “Spilled Milk” and being live on –air with Zack Spencer, the weatherman from Global Television.

Deacon is articulate and passionate about organ donation and wants to do all he can to help with educating the public about cornea transplants and the Organ Donor Registry. For the 460 people currently waiting for cornea transplants in BC, they couldn’t have a more inspiring spokesperson than Deacon.

   Deceased donor: 85.9%
   Living Related: 91.4%
   Living Unrelated: 96.4%  
    source: BC Transplant Society

These statistics demonstrate that living donation is a successful, feasible, and strategic means to address the long, and ever-growing, kidney transplant waiting list. Living anonymous donation may offer one potential alternative to supplement the growing need for kidneys in Canada today.
 
The three-year LAD study has been funded by Fujisawa Healthcare Inc., and received ethical approval from the UBC Behavioural Research Ethics Board. Researchers are not only interested in identifying suitable LAD candidates but also in understanding their motivations for donating. In situations of living donation, where the donor and recipient have a pre-existing relationship, the motivating driver is more easily identified. If a family member or friend is sick and in need, it’s often easier to make the decision to donate an organ, because the donor will readily see the benefits, and may have been intimately involved as a caregiver during the illness. But what about the living anonymous donor who will never know the recipient of their gift? Who are they? Why would they be willing to give a kidney to someone they don’t know? And how do they benefit?

Throughout the LAD study’s year of data collection (a survey, psychological questionnaires and an in-depth psycho-social interview) with a sample drawn randomly from the community, 93 additional individuals came forward on their own initiative wanting to donate a kidney to anyone who needed it. This group (60% female/ 40% male, with a mean age of 47.5 years) became known as the “unsolicited sample” and provided much insight in the motivations of the LAD. Candidates were assessed for their medical and psycho-social suitability as well as their overall commitment to anonymous donation. The researchers identified a number of key motivations. For example, 37 percent wanted to improve the quality of another’s life, while the same percentage believed that donating was consistent with their spiritual beliefs. A little over a third had prior experience with transplantation or medicine. Just under half of the original participant pool passed the psychological criteria to be considered potential candidates for living anonymous donation, should a program be implemented in the future.

On the strength of these findings, BCTS is moving ahead with living anonymous donation in the context of this clinical pilot study. Their research to date has demonstrated that living anonymous donors do exist, and are ready for the program now. We are fortunate to come from a society where others care as much about those in need as they care about themselves.

Parents of children who have received a transplant often find it difficult to balance unique health issues, family, and work. Friends, although supportive, don’t always understand the challenges involved in parenting a transplanted child. Likewise, our transplanted children find themselves in situations where their siblings and peers may not fully appreciate their unique health issues.

Hence, the huge importance of the Children’s Organ Transplant Society of BC. Through the organization’s social events and support networks, transplanted children, and their parents can relate to the experiences of immunosuppression, bloodwork and hospital visits.

Twice a year, families gather to celebrate the joys of childhood, and to appreciate the gift of life we see in all of the little miracle children around us. While our children enjoy the summer picnic or anxiously await the visit from Santa Claus, parents too enjoy the company of other parents who lend a supportive ear or share stories of similar challenges we all face in the transplant community. My family has been greatly encouraged to see so many healthy and strong children who have received transplants.

— Carmen Carriere’s three-year old daughter, Brynn, received a heart transplant when she was six months old.

Putting her newfound knowledge to use, Williams contacted the BC Transplant Society to get more information on its High School Program. She then approached the school district Superintendent, and Principal to garner their support. That led to presentations to the local Rotary and School Trustees. “They were all very supportive,” she says, “lots of people started asking me to speak to various groups.” Williams has even taken her message to a high school in Princeton, a 90-minute drive from her home. “I would like to do more in Princeton, but I have to wait until I have some more time,” she says. For the time being, Williams will keep herself busy in Merritt, as she organizes organ donor registration challenges between classes at Merritt Secondary School. She has also been working with a local gym and sports teams to influence young people to consider organ donation.

The community has really been supportive,” acknowledges Williams. “As young people, we often think that we are invisible, but by learning more about this important issue, we can start to help ourselves.”

The BC Transplant Society’s High School Program reaches out to thousands of students throughout the province each year. But the program’s popularity often stretches the available volunteer resources. As such, we are looking for volunteers interested in speaking to students. An orientation and resource materials are available for all speakers. If you would like more information about this program, or would like to volunteer, please contact:

In 2002, the McGill protocol was developed with input from transplant and HIV experts from that university. This protocol outlines the acceptable criteria, based upon medical evidence as well as what was thought would be acceptable to both medical and surgical transplant specialists, for listing co-infected (HIV/Hep B/ Hep C) patients for liver transplant in Canada.

BC standards are considerably more inclusive than the McGill Protocol and must be agreed upon and adhered to in order to ensure equity and equal access to transplant assessment for all patients who fall into this new medical category.

As of the fall of 2003, BC is currently the only Canadian Centre that will assess and, if suitable, list HIV/Hep C positive patients for liver transplantation. At this time no other liver transplant programs are willing to assess these patients.

BCTS has assessed seven co-infected liver patients using its own criteria; however, to date no co-infected patients have been transplanted although one was wait-listed for transplant with high priority before passing away from liver failure while still on the list. We continue to monitor four such patients, who currently do not yet meet the eligibility criteria, but may in the near future. Once a patient meets all criteria they can be listed and activated for transplant.

The event with the Minister also included an opportunity for Saanich South MLA, Susan Brice to publicly present more than 200 organ donor registration forms that were collected in her riding at a number of public “meet and greet” events in December. Local BCTS volunteers helped with the initiative.

Over the coming year, the BCTS will be running awareness campaigns in selected communities in each of the five regional health authorities—Surrey, New Westminster, North and West Vancouver, Kelown, Prince George, and Victoria.

The BCTS is asking civic leaders, local businesses and institutions to support the campaign by encouraging employee registration drives. Local media is also being asked to play a role in creating increased editorial awareness.

The aim of these campaigns is to bring the issue of organ donation and transplantation closer to the community level. Did you know that 35 people are currently waiting for a transplant in Burnaby? Did you know that 10 people in Quesnel have had a transplant in the last 10 years? And did you know that more than 30 per cent of Comox Valley residents are registered on the Organ Donor Registry? The provincial average is just 12 per cent.

Successful campaigns have been concluded in Surrey and New Westminster. Other communities will follow throughout the year.